Tomorrow, February 29th is National Rare Disease Day and the Joint Committee on Health and Children will focus on rare diseases in Ireland when it meets with a number of groups dealing with rare diseases tomorrow, Wednesday, 29th February.
To mark National Rare Disease Day, Genetic and Rare Disorders Organisation; Rare Diseases Taskforce; Rett Syndrome Ireland; and 1p36 Deletion Syndrome Ireland will address the Committee.
Rare Disease Day is being held on 29th February this year and is an annual, awareness-raising event co-ordinated by EURORDIS, a non-governmental patient driven alliance of patient organisations, at the international level and National Alliances of Patient Organisations at the national level.
Committee Chairman, Jerry Buttimer TD said: “Rare diseases are life threatening or chronic debilitating conditions affecting no more than 5 in 10,000 people. Between 5,000 and 8,000 rare diseases have been described, affecting about 6-8% of the population in the course of their lives. Approximately 80% of rare diseases have a genetic origin and the life expectancy of patients with rare diseases is significantly reduced. Many of these conditions are complex, severe and debilitating.
At present, scientific knowledge on rare diseases is limited – less than 150 of the known rare diseases have a marketed drug treatment.
Our meeting will enable committee members to get an in-depth briefing on the issue in Ireland and provide the groups dealing with various rare diseases with an opportunity to outline the key issues they face in terms of prevention, detection and treatment of rare diseases, access to appropriate medication and the identification of appropriate centres of expertise for rare diseases which is a key priority.”
The meeting takes place tomorrow, Wednesday, 29th February, at 1.45pm in Committee Room 1, LH 2000. Committee proceedings can be followed live at:http://bit.ly/24YmPI
The meeting will also be televised live on the UPC television network, Channel 801.
For further information please contact:
Houses of the Oireachtas,
P: +3531 618 3903
F: +3531 618 4551
Jerry Buttimer, Fine Gael
Catherine Byrne, Fine Gael
Michael Colreavy, Sinn Fein
Ciara Conway, Labour Party
Regina Doherty, Fine Gael
Robert Dowds, Labour Party
Peter Fitzpatrick, Fine Gael
Seamus Healy, Independent
Derek Keating, Fine Gael
Billy Kelleher, Fine Fail
Eamonn Maloney, Labour Party
Charlie McConalogue, Fianna Fail
Mattie McGrath, Independent
Denis Naughten, Independent
Caoimhghín Ó Caoláin, Sinn Fein
Colm Burke, Fine Gael
John Crown, Independent
David Cullinane, Sine Fein
John Gilroy, Labour Party
Imelda Henry, Fine Gael
Marc Mac Sharry, Fine Fail
Jillian Van Turnhout, Independent
Myeloma falls into the category of rare diseases so we will watch the outcomes and discussions and report on anything of relevance after the meeting.